Finding Ourselves on the Autism Spectrum

Archive for the ‘Helping others’ Category

Freaking out

This is the third new post I’ve started in as many days. My thoughts just haven’t been coming together around anything in particular. I think I’ve got something to share now, though.

I was woken in the middle of the night last by a six-foot-tall teenager telling me he was “freaking out” and couldn’t get back to sleep. I have a tendency to freak out myself when my sleep is suddenly interrupted – that really made the baby years fun – so I wasn’t exactly at my best for handling the situation. It seems that what put my already anxiety-prone son over the edge was watching a scary TV show last evening. This is usually supposed to be an issue for younger kids, but it’s not that way at our house.

I hadn’t even authorized the viewing of this particular show, which was, by the way, not one of the scariest Doctor Who episodes I’ve ever seen. But you can never tell what’s going to hit a nerve with another person, and I get that. I personally stopped watching a lot of crime dramas, because that stuff really happens to people, so it does tend to bother me. I’m not so much worried about aliens moving into secret rooms in my house that I don’t know exist or impersonating me while I’m in a coma.

So it’s my fault the show was available, because I mostly record them for me. Hubby is finally watching some with me, mostly because a lot of his favorite shows are into reruns, and there aren’t any compelling sporting events to watch at the moment. So he gave a couple episodes a try and decided it was actually kind of fun. Also, Alvin usually likes a lot of what I like, so he starts watching any time I turn on an episode when he happens to be around. Even the very sensitive seven-year-old Theodore has started being OK with having the show on and not feeling a need to go elsewhere, so I figured maybe we were OK in terms of everybody’s comfort level. And thanks to our new trial DVR setup – which we’ll probably have to give up after the introductory low price runs out – we can watch anything we have recorded on any of the televisions in the house. So while Simon was supposed to be getting his homework finished in the basement, Alvin turned on the episode, and that’s when the work stopped.

Simon actually can’t stop watching something once it’s got his attention. I’ve tried. He’s tried. I can yell right next to him or even walk around in front of the TV waving at him, and he just keeps looking around me, even though he knows it’s going to cause trouble. No matter what is on or who is watching, everyone in the house now knows to respond to the word “pause” where the TV is concerned, so that I can get my kid back. (In a house full of guys with a mom who can only mentally attend to one thing at a time, this is sometimes necessary with the rest of us, as well :)) Even Simon can usually pause the show, but he can’t just stop watching or look away while it’s playing. So it was a bit of a challenge when I came by inquiring about the status of his homework to get Simon back working again. Alvin paused the show, but Simon was hooked in by then, and kept begging me to let him finish. I probably would have gone along if it wasn’t getting so late in the evening and if I wasn’t already worn out from a snow day at home with the kids.

It turned out that there was more than one unfinished homework assignment, and one assignment was missing altogether. So we spent the next half hour looking for the missing assignment while I was supposed to be making dinner, but we didn’t end up finding it. Simon eventually got his other assignments done, and I agreed to let him finish the show – there were only 15 minutes left, anyway. He mentioned that it was kind of creepy, but he smiled as he said it, probably because he really likes the funny bits, so I wasn’t especially concerned. Some things bother him and some don’t, and it’s hard to predict what will be a problem. It turned out that this was a problem.

Simon came downstairs a while after going to bed and was a bit restless. He said he might be a bit wound up from the show, and I asked if he had something more relaxing to read in bed. It took a few minutes, but he came up with his copy of Cheaper by the Dozen – he’s listened to the whole book on CD many times, but this was a paperback copy he decided to try – and things were looking good. It’s a comfort thing for him, and I was pleased that he had come up with the idea on his own. When I went upstairs a little while later, he was already asleep. Problem solved. Not.

So I get the knock on my door sometime between midnight and one. The first thing I tell my son is No More Doctor Who. Then, in my confused and stressed and under-pressure-to-fix-things state, I spend an unfortunate period of time listing all the problems that this has caused and would probably cause in the near future – my inability to get back to sleep, the fact that we both had to be up at 5AM and would both likely be useless then, the fact that he was going to be extra tired while trying to deal with talking to his teacher about his missing assignment and also returning to the new class this semester that already had him so upset that he had to leave class the day before, etc. And I let him know that I didn’t have a quick fix.

When I had started to calm down a little, I found myself talking to Simon about taking control of his thoughts and developing some skills in less stressful moments that he could have ready when he did find himself “freaking out”. I talked about my personal spiritual beliefs and about finding his own beliefs that could carry him through difficulties. I mentioned that sometimes the good in the difficulties we experience is that we are motivated to reach for something better than just learning to live with discomfort – that we can have more than that and are meant for more than that. I also told him that when I wake up on my own once in a while “freaking out”, there are things I read and ideas that I focus on that help to remind me that I get to choose which thoughts to hang on to in my mind and which to send packing -that just because a thought appears in my head doesn’t mean I have to claim it and feed it and make it my own.

I’ve tried having some of these talks before, but because the subject isn’t entertaining, it’s hard for Simon to pay attention for long. That’s always bothered me, because I know what it is to have some measure of these problems, and I want for my son to be able to have the help that I’ve had. He seemed fairly motivated right then, and we didn’t have anything else to work with, so he went along. I got him to work on counting and slowing his breathing – that’s one we’ve practiced before – and I prayed out loud and said some affirmation-type stuff that I’ve personally found helpful, and he started to feel calmer. He even came up with an affirmative thought of his own. I stayed in the room while he went to sleep.

Here’s the cool part. This morning, after we both woke up enough to be somewhat coherent, Simon told me that something had changed for him. He said that before the way he’d always gotten through things was to just put things that were bothering him back in some corner of his mind and try to just move around them or ignore them, but they were still there. He said that in just a few minutes of listening and breathing he was able to feel so much better and like he really could choose different thoughts. I mentioned that he could use some of what he’s learned on his own the next time he’s having a difficulty, and that we’d have a better starting point the next time he wants help from me, since we have an idea what’s working for him. He plans to write some helpful thoughts down at bedtime to keep next to him for when he’s having a problem. If that works out for him, I think I might suggest that being a helpful practice for before problems start.

Once we were both in this better frame of mind, Simon found his missing homework assignment. He even had time to complete most of it before leaving for school. As I keep finding to be the case, we didn’t get to choose the experience we were going to have last night and this morning, but we did get to choose how to respond. We even got to choose again after getting off to a bumpy start. And for us that gave the experience meaning and value.

I’m glad I’ve found a place to share these moments. This isn’t exactly Facebook material. ūüôā

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Coming back into focus

I get overwhelmed a lot.¬† By events, personalities, sensory input, illness and injury, too many responsibilities, too little time ¬†– even sometimes by a single thought that goes round and round in my head.¬† Mostly it’s the thinking that gets me.¬† When my head is in a good place, I cope with the other stuff.¬†

I’ve¬† tried to start several different posts since my husband’s truck accident.¬† I can’t seem to get my thoughts organized around any one topic.¬†¬† We’re both functioning fine and grateful for how things turned out, but we’re also still processing some things, and for me that takes the form of having trouble concentrating.¬†¬† That’s not a new experience for me, but trying to write and stay in touch with people when I’m feeling that way is new.¬† Isolating myself has always been much more my style.

Here’s a picture we took at the junkyard the day after the accident, btw :

The force of the impact was all on that driver’s side door.¬† Amazingly enough,¬†my husband¬†made it out of this with just a sore foot and one scratch on his head, neither of which is bothering him now.¬†¬† And the other driver was fine and didn’t require a trip to the hospital, which is also a great blessing.

It could have been so much worse.¬† We got through the crisis of the day, and now we continue to manage any difficulties that arise as a result.¬† We continue to add little bits to the pile of stressors that’s been built up over the past few years, and we keep moving forward.¬† There’s a lot of stuff in that pile.¬† Deaths in the family, business difficulties, financial worries, his¬†experience with cancer a couple years back (he’s all clear now), and all the stuff that falls under the heading of spectrum-related issues.¬† Some things are mostly difficult for a while, and some are always with us.¬† And every time it feels like it’s a bit too much to manage, something new gets piled on top.

I spent so much time early on in our marriage weathering¬†problems big and small and waiting for things to get better.¬† I kept thinking we would get to some point where there would be a big light at the end of the tunnel, and we could breathe a sigh of relief.¬† I really thought we were there for a while when Simon was in kindergarten, verbal and bright¬†and functioning reasonably well in the safe little world that existed there.¬† He had overcome so much.¬† Then came the next tunnel – first grade – which was much longer and darker than anything we had experienced before.¬† We’ve come through that, too.¬† And on to the next, and the one after that …

I had to switch metaphors somewhere along the line.¬† Now to me it’s more like riding waves.¬† When things are good, I enjoy the ride thoroughly and for as long as I can, because I know it’s only temporary.¬† The bad stuff is only temporary, too, which makes it easier to tolerate.¬†¬† I think what maybe constitues my own version of a mid-life crisis is that somewhere in these past couple years I let go of that idea that someday everything will get better, and I think I’m still grieving a bit over that.¬† I’m not devastated, but it makes me sad.¬† Some things will get better.¬† Some will get worse.¬† It will all keep changing, and the only thing we can do is choose how we respond to each thing as it comes.¬†¬† My parents are in their seventies and have a good life, but it isn’t anything you’d call better – it’s just different.¬† The problems are different, and the enjoyments are, too.¬† For better or for worse, I think I finally feel like a grown up.¬†

OK, that was kind of a depressing thought.¬† But now that it’s out there (instead of rattling around in my head), I don’t really feel terribly depressed.¬† I’ve been to this place in my mental processes before.¬† This is the point I have to reach just before I finally decide to take charge of my thinking.¬† Once I can see what’s going on, I get to choose where I go next, and that’s empowering.¬†

There’s some kind of story my mom got from her Alanon experience that I’m probably not going to get exactly right here, but I think it’s still worth sharing.¬† (I realize this is¬†yet another metaphor, but that’s¬†how my brain works, so please bare with me.) ¬†It’ something along the lines of a person walking down a path and falling into a pit.¬† Eventually somebody comes by and helps them out.¬† I’ve heard different variations of the story.¬† Sometimes the person who falls in repeats the experience enough times that eventually they learn how to find their way back out on their own.¬† Sometimes the one who comes to help jumps down into the pit, too, which¬†turns out to be¬†OK, because that person has been there before and knows how to get back out.¬† Sometimes the person walking down the path has fallen down enough times that they remember and learn to avoid the pit altogether.¬†

(If I was being at all unclear here, the pit is supposed to be a metaphor for a negative behavior or way of thinking. ūüôā¬†)

I’m not so good at avoiding the pit, although it happens every once in a while.¬†¬† Mostly I’m better¬†than I used to be¬†at climbing back out on my own once I realize where I am, but that can sometimes take a long while, and the effort can be exhausting.¬†¬† It just seems to work a whole lot better when there are people around to remind me that I don’t have to stay where I am if that’s not working for me.¬† It’s hard to reconcile that knowledge with my lifelong¬†instinct to run and hide within myself whenever I feel stress, so I’m trying¬† a different approach.¬†

I’ve been catching up on reading some other blogs over the past couple days, and I’ve started Rudy Simone’s Aspergirls book, too.¬† Reading other’s thoughts and experiences helps me to remember that I’m not alone in mine.¬† And whether this post makes any sense to anyone else or not, writing¬†this and¬†other things I’ve shared with family and other friends over the past couple days¬†is helping to bring things into focus for me.¬† Thanks for listening.¬†¬†

¬†Aspie boy just finished his midterm exams and came home early, so he and I are enjoying some peace and quiet while we have the opportunity.¬†¬†¬†The kids are all off school tomorrow for a “records day”.¬† I finally feel clearer and ready to move forward instead of staying stuck.¬†¬†That’s not a bad way to start into a long weekend .¬†¬†ūüôā

Helping each other

A few months ago I was at a local support group meeting for parents of kids with Asperger‚Äôs Syndrome. It was started by a couple friends of mine with kids on the spectrum, and we‚Äôve been meeting about once a month. One of my friend‚Äôs daughters agreed to come and speak to the group to share her thoughts and experiences as a young woman with Asperger‚Äôs. I was impressed with how well-spoken she was and with her bravery in being willing to speak with the group. It made me realize that someone being poised and articulate and performing well in school didn’t necessarily eliminate the possibility of that person being on the spectrum, and that led to more exploring of my own life experiences. Starting out on that path has led me to meeting many wonderful people who have helped me to understand that I am not alone and that who I am is really OK.

Soon after reaching the conclusion that I was probably an Aspie myself, I was presented with the opportunity to help this young woman in exploring her own life. She had decided to write a research paper about having Asperger’s Syndrome, which was a huge step for her, and I was asked if I would agree to be interviewed as an older woman who was self-diagnosed. In typical Aspie form, and because of difficulty arranging both our busy schedules, we handled the interview by exchanging emails rather than in person. It was an interesting experience for me and served to reinforce my realization that I’ve spent my whole life using my mind to figure out strategies for coping with situations that didn’t feel natural to me.

This week we had another support group meeting, and my friend read the very eloquent conclusion to her daughter’s 25-page paper, in which she had expressed how much better she was feeling about herself and her future after having worked on this paper. I asked my friend for permission to share the email she sent to me after the meeting and offered to change their names to initials to protect their privacy:

“Hi Diane,

You have no idea how much hope you have given me for L by revealing your suspicions about having Asperger’s. When you first emailed me and said you think you have it – I thought no – you’re outgoing and friendly and socially appropriate and a great mom… you don’t appear to be on the spectrum. But after reading articles about girls and Asperger’s, well, it’s very different than for boys. Girls can hide it so much better or like L says – “fake being normal.” The more I learn about it, the more I see it in two of my sisters and my mom and my grandma.

Your advice to L not only helped her to write a great paper, but also to learn how to tackle her own personal issues. She has used your “cognitive therapy” approach to talk herself down when she is anxious and she says it helps. Knowing how well you have turned out – you have given me hope that L WILL eventually drive, she WILL go to college, she WILL get a job, get married and hopefully be a mom, too. So thank you for trusting me enough to share this information about yourself.

p.s. I liked our quiet little meeting where it was just the three of us!

p.p.s. L is gone for a whole weekend on a Youth Group Retreat and I didn’t have to force her to go. ūüôā

Take care,

B”

This absolutely made my day, and I wanted to share J We really can make a difference in each other’s lives.

„ÄÄ

The next step

Over the years I’ve let go of a lot of my attachment to goals and deadlines.¬† We get to things when we’re ready, and we don’t always get to decide when that will be.¬† Sometimes we don’t seem to be moving forward much at all.¬† Sometimes we lose some ground, but we try to remember that the overall trend is upward.¬† It’s just not a straight line.

Today has been a decent day so far.¬† Middle son came back from a sleepover¬† and¬†has been¬†enjoying his new Rockband for the Xbox.¬† He’s the only one of the three to take much interest in music so far.¬† My youngest had a playdate at a friend’s house and¬†put a lot of effort into trying to clear a light layer of snow off the driveway to impress his dad before he got home.

My oldest¬†has been¬†a bit stressed today.¬† Nothing along the lines of a full blown crisis. At least not right now.¬† You never know what the day may bring.¬† But he woke up restless and not happy about the homework still remaining to be done before tomorrow, and he had it in his mind to escape his worries for a while by attending a local weekly Yugioh tournament.¬† He never does as well as he thinks he will at these things, but he gets a bit better each time, and he no longer falls completely apart in frustration.¬† So if we have time, as we did today, it’s nice to indulge him.

He did good by finding the website of the place where they listed the time of the tournament.¬† Then his dad asked him to call the place and confirm that it was actually happening today.¬† Not strictly necessary, but a good way to get useful information about any last minute changes.¬† And not a big deal for some people.¬† But my guy?¬† Hmmm.¬† Phone call.¬† Yeah, he wasn’t exactly comfortable with that.

This is the part where I have to figure out what he can actually manage today, because often he doesn’t know himself.¬† It doesn’t always work trying to base it on what he’s done in the past.¬† Since puberty hit, he manages some things a lot better, and some things have gotten more difficult.¬† He can stay in the classroom during every period on a pretty regular basis now and consistently participates, and he doesn’t refuse to do his assnments.¬† He can attend after school clubs in his areas of interest on his own. That’s all tremendous progress. At the same time, inviting a friend over happens much less frequently and only when we have just the right combination of mood and circumstances.¬† And he does NOT want to do phone calls.¬†

There was a period of time when I just would have pushed.¬† We’ve done a lot of pushing over the years, and it’s mostly turned out to be for the best.¬† He’s all about inertia and getting started, and once he gets past that, he’s usually fine.¬† It’s exhausting, but it’s worked.¬† But as he’s gotten older, sometimes the pushing just makes things worse.¬† Also, this kid is 15 and over 6 feet tall now, and I don’t look all that intimidating anymore, if I ever did.¬† He finally has some investment in wanting to accomplish things himself, though, and the best situation is when I can appeal to that.¬† But sometimes, he’s just not up for something, and it’s not a big enough deal to make into a Thing.

So here’s what I’ve been trying lately – with him, with the other kids, and with other¬†situations that I need to address in my day.¬† I just ask myself, what’s the next step that we can handle?¬† What’s something to get us moving in a positive direction, if only moving slightly?¬† If he can’t manage the talking, can he look up the phone number? Can he dial? Can he sit next to me and listen to both sides of the conversation to get a feel for how that goes and what words get used?¬† Rather than bailing on the whole thing or handling it all for him, how can we help him move forward even just al little?¬† And often, once the pressure of having to do the whole thing is removed – because the anxiety that accompanies his autism is more debilitating than any other aspect of this condition for him¬†– he finds he can do more than he thought he could.¬† And then he gets to feel like he accomplished something.

So he did everything up to sitting with me to make the call, and then they didn’t pick up at the other end. We¬† decided it was probably fine, anyway, and made preparations for him to go.¬† He handled his dad leaving him there on his own, us missing his initial phone call home, losing¬†all his matches (including one to a little kid which produced¬†a brief period of understandable swearing back in the car), and now he’s moving forward on his homework.¬† There’s nothing¬†remarkable about the day, but we helped our boy get past being stuck, and he is¬†handling his frustration without it overwhelming him, and to us that makes it a Good Day.

Homework on and off the spectrum,and Asking for help

Hi, Everyone.

I don’t know if this is considered bad form, but I just wrote such a long response to a question I came across on a Facebook posting for Hartley’s Life with 3 Boys that I want to turn it into a blog post.¬† I put¬†more time and thought into it than I had initially intended, and I’m adding a few things here. ¬†I mostly feel the need to write things after a comment or question¬†made by someone else starts me thinking. ¬†I really want to post something today, and I¬† have so much other stuff to get done, too¬†– including reading through all the comments that have showed up since I checked last evening (I promised myself to get the laundry and cleaning out of the way first, and that can be my reward:).¬† Plus, this is¬†a less angsty, slice of life sort of thing that I want to be able to write about sometimes.¬† If I get more time later I may move on to something deeper.¬† Then again, who knows?

On asking for help:

I feel like mentioning first that reason I got on Facebook this morning before venturing here or even to my email is that I decided to ask¬†¬†for something I want.¬† Specifically, I was asking friends nearby for help with transporting my youngest home from school certain days so that I can have time to¬†spend on my Aspie son and his homework right when he gets home and can still focus.¬† That’s a pretty big thing for me – the asking and the sharing of a little Aspie part of¬†our lives¬†.¬† But since I’ve been asking people here for help with questions and for doing me the great favor of reading my initial posts,¬† I’m very pleased with how that’s working out, so I’m trying to build on that momentum.¬† While I was writing this I just got interrupted by a friend letting me know she can help with my request, so that’s worked out, too.¬†¬† I also asked/informed hubby this morning that he ought to tell me I look skinny today, which I do, because I haven’t yet found a way to eat while doing all this typing.¬† Since he’s an intelligent man, he responded with appropriate enthusiasm ūüôā

And now on to what was supposed to be my post before I digressed.  On the subject of how we approach homework for my three boys:

I don’t know what would work for anyone else, but this year my ASD guy started high school, and we’ve mostly gotten into a groove with the homework after a pretty bumpy start.¬† Mostly it’s been a matter of insisting that he and I both go through each subject for the day and see what needs done and if he has the needed papers, books, etc., BEFORE we can talk about going off to do anything else. I still have to insist on this every day.¬† Then I ask him to give me an estimate of how long each item will probably take, and we figure out a total (adding a bit more¬†time in case he’s figured low), and we look at what else is happening that evening and how much time he has to work with.¬† He has a parapro, and she provides her own list of the homework assignments, in case he missed anything.¬† I had to ask pretty insistently for that, as a matter of fact, but it’s been a huge help.

At this stage, it’s working much better to then ask¬†my ASD guy¬†to generate a plan himself for how he’s going to get things done and in what order, but I used to do that for him.¬† He’s finally become invested in doing well after so many years of me thinking he maybe never would, and being a teenager, he feels a great need to be in control of as much of his day as possible.¬† If time permits, he really seems to need a half an hour of downtime before beginning his homework, so I go along with that, but I keep tabs on the time to make sure that after that he’s at work.¬† If I don’t, it’s a crapshoot as to whether he’ll get moving on his own when the timer goes off or not.¬† If there’s¬†a ton of homework, he can alternate his work with timed breaks.¬†Again, I need to help keep track.

For ASD boy, habit is everything, and if we let things slide or I don’t keep track of his time with him, he gets overwhelmed and starts becoming very resistant to working on much of anything.¬† He has a nice big desk in his room now (mostly he stores stuff there, but it leaves his bed free as a workspace :), so I often have him work there and check on him if his brothers are too much of a distraction.¬† I do have to keep checking, though, because he’ll lose track of what he’s supposed to be doing.

My middle son is NT, but he’s a procrastinator and very absent-minded, and he has pretty intense anxiety and anger issues.¬† What’s finally ended up working for him is that we go through much of what I do with my older son, but more quickly and usually just verbally.¬† If he doesn’t make a plan right when he gets home, it won’t occur to him again that anything needs to be done until late enough in the¬†evening that he ends up having a meltdown.¬† With him, too, a timed period of free time, then back to work until it’s done.

My youngest is only 7 and ahead of grade level in reading and math, so even if we forget his homework until morning, right now it’s no biggie.¬† I do try to get him working on the same plan as the others when I can, mainly because I finally have a system worked out, and habit is such a big deal around here, but he has so little homework, and sometimes there’s just not enough of me to go around and keep track of everybody ūüôā¬† Sometimes something’s just gotta give.

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